2nd (and 3rd) Opinion Update

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Here's what happened at our epic meeting at the University of Chicago yesterday.  It was a long day but a good day for us.

We were seated in our appointment room at 3:30pm, within 30 minutes of Molly's appointment time, so we thought there was no way we be there until 8pm as they suggested was possible.  Yeah, we left at 7:35pm.  Way early! :)  It again took nearly 3 hours to get to the hospital.  At least I didn't make any wrong turns this time.

We first met with Dr. Yassari.  Who is Dr. Yassari?  Another neurosurgeon who we didn't know Molly would see.  He went through the entire exam just as we did with Yamini, checking every movement and symptom afresh.  He was funny too.  After a long visit with Yassari, he came to the same basic conclusions about the Chiari and felt surgery was needed.  He left the room and said he would consult with Dr. Frim and they would return together.  They did, over 1 1/2 hours later.  Wowwy, that's a long wait after a long exam. 

Frim By the way, Dr. Frim is the big cheese.  This is the guy we originally wanted to do the surgery way back just after the diagnosis.  He is the guy our neurologist highly recommended as the expert/specialist on Chiari.  "David Frim, MD, PhD, chief of pediatric neurosurgery and an expert in congenital anomalies of the nervous system," which means Chiari (via).  And we have come to understand that getting an expert at pediatric Chiari on the case is a huge bonus.

So Frim comes in with Yassari and a surgical resident (can't remember that dude's name, but he looked really smart and didn't really say anything).  Frim took Molly through the whole dealio again: tests for balance, numbness, and other symptoms.  He asked questions about the extent of the problem, pain, and effect on life.   He looked at all the MRI film again and explained the details to us again.  These guys are thorough.  Frim told us all the symptoms are very consistent with Chiari, which was the thing that had us confused.  Confusion is totally gone.

Remember I said there were three basic reasons that surgery with Chiari is a must: drop attacks, a syrinx (spinal cyst), or swallowing issues.  Frim added a fourth, something about experiencing other neurological effects from Chiari.  When these larger problems aren't present then surgery may be offered but not required.  For example, the most common Chiari symptom is terrible headaches, migraines, etc.  Sometimes people will have headaches with no other major issues, so they simply manage the pain and press on.  I've even met a person who has/does this.

But Molly has some of the neurological effects Frim mentioned, including problems with finishing thoughts, remembering things, and mental overload when being spoken to.  Frim felt this basically would qualify her for the more necessary camp in surgery, even though they felt surgery was important for the balance and weakness issues as well.

Then Dr. Frim told us that he would be happy to do the surgery if we want him to.  Now get this.  We originally tried to get with Frim but were told we couldn't even have a surgical consultation until August 30th.  So Yamini took on Molly's case instead, and that is what got our foot in the door with Frim.  Our meeting with Frim took only two days after they decided it would be best to meet with him.  Good stuff.  Providence.

Truth is, this is as good as we've felt since the diagnosis.  We are really thankful for the large amount of time they have spent making sure they understand Molly's Chiari.  We are totally confident in Frim and his expertise.  We feel like the fog we were in has lifted completely.  He even said that he felt good that the surgery would relieve "all or some of her symptoms."  Bout time someone said that. :)  We know that there is still plenty of chance that some of the symptoms may remain, but Frim said that because Molly's Chiari is sizable, the odds of a good surgical result are very good.  Great news.

So what's next?

1. We have a call in to Frim's nurse to schedule surgery.  He said it shouldn't be too long to get Molly in.  Maybe a few weeks???  Recovery will be slow and painful, a full 24 hours in the ICU after the surgery and probably another 3-4 days in the hospital.  He showed where the scar will be on Molly, and it will be almost completely above her neck hairline (less visible).   We also discussed accommodation options for me while she is in the hospital and a handful of other things.  Maybe I'll talk about these at a later date.

2. We have canceled our Mayo trip.  We were all prepared to go, but we looked at each other after leaving the hospital and knew that Dr. Frim was the way to go.  We were downright giddy on the drive home.  Chiari is not so much about right diagnosis and making the right decision about fixing it.  At least not in the less complicated cases like Molly's.  It's about having the right people do the work when it's necessary.  Frim is the guy who writes the articles in the journals on this stuff.  Plus, we have had three different neurosurgeons do complete exams on Molly with complete agreement on what needs to be done (and they have consulted with others at the University of Chicago as well as outside, all in agreement).  We are so thankful to know (finally) exactly what the deal is, what needs to be done, and have a plan to take care of business. 

We'll keep you up to date when we know a surgical date or if anything changes.  We are thankful for all of your prayers. 

Brewing Battle

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Christianity Today has a short article recapping the situation with Missouri Baptists: Brewing Battle.  Nothing terribly new or informative to those who have been keeping up, but concise with some helpful external links at the end for those needing to catch up.

The policy addresses an ongoing SBC debate. Baptistshave championed alcohol abstinence since the late 1800s, but a growing number want the SBC to reexamine the issue, said Timothy George, dean of Beeson Divinity School.

"There is growing discontent, people saying that we shouldn't be mandating things that aren't spoken clearly about in Scripture," George said. "It's hard to argue that the Bible requires total abstinence."

Keller on Idolatry

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(New link to Keller's "Talking About Idolatry in a Postmodern Age.")

I can't find a way to link to it directly, but you can read Tim Keller's "Talking About Idolatry in a Postmodern Age" at the Gospel Coalition site.  I don't think I have it linked elsewhere.

Start on the Gospel Coalition articles page, click on "authors," click on "Tim Keller" under the "Contemporary Authors" section.

Personally, I don't understand why sites are built so you can't link directly to everything.  But at least it's there.  Maybe they will eventually add permalinks to everything.

UPDATE: They have added url's to all the articles. Good work guys. "Talking About Idolatry in a Postmodern Age."

Family Health Update

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Ugh.  Important news...

1. Molly's surgery has been postponed.  When? Dunno.  They wanted to cancel until we talked with the main neurosurgeon at the University of Chicago, Dr. Frim.

2. We are meeting with Dr. Frim tomorrow (Thursday).  We just found out Tuesday, the same day (I think) we had the surgery cancelled.  Why did they cancel the surgery with Yamini when the Frim meeting would happen so soon?  No honking idea.  Are they planning on Frim doing the surgery?  Are they unsure of something they haven't explained to us yet?  Are they just trying to make us MORE frustrated?  Dunno.  But our appointment is at 3pm tomorrow and we are about to find out.

3. Dr. Frim's nurse told us he is one of the slowest doctors, so that we may not leave our 3pm appointment until like 8pm.  Say what?  Yep.  So that means we leave at noon tomorrow and will arrive home maybe past 10pm or so.  Fortunately one of our babysitters isn't working tomorrow and can help all day.  Nice.

4. We are still going to Mayo Clinic on the 2nd of July.  We will take the kids to my family in Pontiac, IL on Saturday, come back to Woodstock so I can preach on Sunday, and then head up to Mayo.  We will be there, according to their information, for 2-4 days.  So if it lasts more than 2 days we will be stuck there over the 4th of July and have to wait until the 5th for more tests, meetings, or whatever they require. 

Dsc_001220070627_2 5. Just when you thought our family has had enough, the hits just keep on coming.  Elijah busted his head open today.  Just when I sat down to start doing a whole pile of work, I got a call and had to rush home.  It seems the dresser in our room jumped in front of him when he was being chased around our bed by his brothers.  So the next three hours were spent at the Emergency Room looking for some staples to get that scalp back together.  Seven staples later he was just fine.  And let me just say that I didn't see one tear from my six year old, even as I held him tight and the doctor treated him like a paper product.  After a good initial cry when it first happened, he was pretty tough and even found time to root on the Cubbies.

Dsc_004720070627

Music Monday 6.25.07

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InnocenceThree words: The Innocence Mission. 

The Innocence Mission is Karen and Don Peris and Mike Bitts.  Karen is the vocalist, and her voice is like something out of a dream.  It's lovely and broken and hopeful.  Their musical style is a delicate and simple folk. 

I picked up their newest, We Walked in Song, after falling in love with Sufjan's live cover of "The Lakes of Canada" (though that isn't on their newest album).  We Walked is amazing with songs like "The Brotherhood of Man" and "Into Brooklyn, Early in the Morning."  (Paste and Pitchfork Reviews)

From "Colors of the World"...

Blue could be a winter coat
or the sea, Lake Maureen, a window
or a downpour on my street.
This bit of yellow could be a leaf
or a beam of light, a girl in a taxi.

And I think of you in the colors of the world.
And I did meet you in the brotherhood of man
when I was traveling a long way from my home
and you are a friend of mine.

Black is the piano you play at school in the lobby,
looking out at the gray and orange,
green grass on your feet.

And I think of you in the colors of the world.
And I did meet you in the brotherhood of man
when I was traveling a long way from my home
and you are a friend of mine.

My second purchase was Now the Day is Over.  This is an album of lullabies, highlighted by several notable and beloved songs like "Over the Rainbow" and "Edelweiss."  Lovely stuff handled gently, with a continued sense of fragility and gentleness.  Hard to believe these songs, which I would never look for on CD, are done this well. (Paste Review)

The third album I found was Birds of My Neighborhood, which is very new to me and just starting to get time in my rotation.  It contains "The Lakes of Canada," which is a beautiful song.  Through a listen or two, it's just as wonderful as the others. (Pitchfork Review)

Go over to The Innocence Mission's MySpace to hear more.

Surgery Scheduled

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We are planning on going for a 2nd opinion at Mayo Clinic on July 2nd, but we also have surgery scheduled at the University of Chicago at the first possible opportunity: July 13th, a Friday.  Yes, Friday the 13th.  Awesome.  Enjoy this (for mature audiences only)...

Molly McCoy: Chiari

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My wife, Molly McCoy, has been diagnosed with Chiari I Malformation.  This page will include links to all of my posts about my wife and Chiari, as well as information about how you can donate a brain to her.

Posts, in the order I wrote them...

Please Pray for My Wife
Visit to the Neurologist
Coming Neurosurgery Meeting
Weekend Update About the Chiari Challenged
Molly's Email Address
Video of Chiari Surgery
Consulation Coming Tomorrow
Consultation and Confusion
The Chiari Call

The Chiari Call

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Uch_0053691Dr. Yamini called today, and yeah, that's him on the right.  Really like him so far. 

He has agreed to do the surgery.  He consulted with a handful of other neurosurgeons and Molly's neurologist and pretty much everyone agreed that surgery is at least recommended.  Problem is that they are only giving Molly a 50/50 chance that the surgery will help her.  Actually, Yamini thinks the odds are better than that.  But the general consensus is that they aren't extremely confident in good results, meaning that there is a chance Molly could have surgery and still be suffering some, most, or all of her symptoms.

Yamini said that Chiari surgery is only absolutely necessary when the symptoms include 1. problems swallowing, 2. drop attacks (sudden spontaneous falls followed by quick recovery), or 3. syrinx (cyst on spinal column).  In these cases an operation is crucial and urgent.  Molly doesn't have these.  Now that's a good thing because these things are bad, but it makes surgery seem more optional. 

Yamini's greatest concern, and ours as well, is Molly's struggles with balance and walking.  He feels these can be serious enough to warrant surgery, which is why they have agreed to do it.

But the odds of a favorable outcome feel too low, and concern us.  So we are considering a 2nd opinion from Mayo.  We still have an appointment on July 2nd and may keep it.  We can even keep it and have the surgery at the University of Chicago with Dr. Yamini if their opinion matches the other doctors since Dr. Yamini would probably not do the surgery until at least July 6th, and maybe even the 13th. 

So now we are praying and trying to decide what to do.  I think we are leaning toward Mayo.  When your wife is about to have her brains opened up, you just want to be as sure as possible that you are taking necessary risks based on the best opinions.

Geez, this is tough.  Thanks for your continued prayers for Molly.

Drop_box_molly On a more positive note, you may have noticed the "brain donation" button on the top right of the blog.  Please pray about donating your brain, or the brain of a loved one. 

We figured since Molly's brain is just to big that we might get a smaller one donated to us.  If you have the ability to donate a brain, please do so asap. 

When you click the above link you will find a map of all the drop boxes around the country for brain donations, such as this one (though the actual drop boxes may vary in color).

Thanks for considering this.

The Simple Way, 7 Alarm Fire

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Please pray for The Simple Way community is Philadelphia (Shane Claiborne and the rest) who are suffering from a fire that leaves several families homeless as well as possession-less.  Read more at TheSimpleWay.org.  More...

This morning, a 7-alarm fire consumed an abandoned warehouse in ourKensington neighborhood in Philadelphia. The Simple Way Community Center at 3200 Potter Street was destroyed as well as at least eight of our neighbors’ homes. Over 100 people were evacuated from their homes, and 400 families are currently without power. Despite this developing tragedy, we are incredibly thankful to share that all of our community members and every one of our neighbors is safely out of harm’s way.

This fire will forever change the fabric of our community. Eight families are currently homeless, and in many cases have lost their vehicles as well as their homes. One of our neighbors, the Mahaias Family, lost their three cars as well as the equipment one family member uses for her massage therapy business. Teenager Brian Mahaias is devastated not because he has lost his belongings, but because he fears that this fire will force him to move away from this neighborhood that is his family as well as his home.

The Simple Way has lost a community center that was home to our Yes! And… afterschool program, community arts center, and Cottage Printworks t-shirt micro-business as well as to two of our community members. Community members Shane Claiborne and Jesce Walz have lost all of their belongings, Yes! And…’s after school studio and library were ruined, and community member Justin Donner’s Cottage Printworks equipment and t-shirts were destroyed.

We are thankful that we are able to help each other during this time of need, and we will continue to keep your informed about today’s events.

We have established funds to support the families who have lost their homes, the Yes! And… afterschool program, and the Simple Way community.

A fund to support the families has been established through a partner organization, EAPE. Tax-deductible donations can be made at https://www.tonycampolo.org/online_donation.php. Please make sure to put “Kensington Families Fund” in the memo section.

Donations to the Rebuilding Fund can be made via PayPal to contribute@awip.us.

-The Simple Way Community

9 Marks Blog: Church Matters

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9 Marks, the very helpful ministry of Mark Dever and Matt Schmucker from Capitol Hill Baptist in DC, now has a blog. Check out Mark Dever’s introductory post.  From a 9 Marks email...

Ourintended audience, as with most of 9Marks material, is pastors, church leaders, and seminarians. At the same time, we hope that all Christians become more interested in church matters, because we believe the local church is the focal point of God’s plan for displaying his glory to the nations. That includes all of us who profess faith in Christ.

Blog contributors will consist of Mark Dever, Matt Schmucker, Jonathan Leeman, and the 9Marks lead writers, as well as several like-minded pastors and occasional guests. For the time being, we thought we’d try opening the blog to public comments. Hopefully it can be used as a place of honest inquiry and discussion regarding pastoring and leading local church life.

The Clintanos

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Johnny_sack_cigaretteThis is a funny spoof on The Sopranos ending by Hillary and Bill Clinton for Hillary's campaign.  It's a set up to announce her campaign song. I wouldn't vote for Hillary if she were a close relative or the only candidate, but I still like the idea for this video.  Oh, and don't miss the "Johnny Sack" cameo.

Music Monday 6.18.07

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I haven't felt very musical today, but that won't stop me from posting this Music Monday.

First I want to mention the movie Once (trailer).  Man, I want to see this so bad.  It stars Glen Hansard of The Frames, and has received a great response from both critics and fans.  The movie is supposedly thick with music, good music, "10 quietly brilliant songs, each built around piano, acoustic guitar, violin, cello and the two headliners' soft, sweet voices" (via).  What I've heard sounds great (hear the central song, "Falling Slowly," on their website, hear more at Once MySpace).  Here's where you can pick up the soundtrack.

With all my wife's issues, this song has been in my head.  Here are three different versions of "Fix You."

Consultation & Confusion

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I wish I could say all went well today and the next step is clear.  It wasn't all roses and the way forward isn't clear yet. 

The neurosurgeon, Dr. Yamini, seemed like a great guy.  Lacking the quirkiness of so many doctors, he was friendly, laughed at my jokes, seemed genuinely concerned, and responded with wisdom to the situation at hand (as best we can tell).

I'll try to stay within the nutshell.  He agreed she has Chiari I Malformation (knew he would), but didn't feel we should schedule surgery just yet.  Not because Molly might get better, but because of at least a couple of things...

1. There is no evidence on the MRI films of any major effects from the Chiari, though the Chiari itself is evident.  Often Chiari sufferers have developed one or more cysts in the spinal cord called a "syrinx."  At the least there are often spots on the chord that show problems occurring in and around the spinal column.  Molly's spinal chord is "pristine" according to Dr. Yamini, meaning it looks just fine and has absolutely no noticeable effects from the cerebellum pressing on the spinal column.

Because of the lack of noticeable trauma on her spine, Dr. Yamini is curious about whether or not the symptoms are coming from the Chiari Malformation or something else.

2. Molly's symptoms don't seem to match what Dr. Yamini has seen many Chiari patients.  Often people experiencing dramatic Chiari symptoms have had some lesser symptoms long before.  Things like chronic, bad headaches.  Molly's symptoms just started a month ago, and she went from very healthy and feeling good to awful symptoms. 

Dr. Yamini was also concerned for Molly's unbelievable balance problems, and wasn't exactly sure her symptoms would be this dramatic when the Chiari hasn't produced noticeable effects on the spine.

Because there is no trauma and the symptoms are not quite aligning like typical Chiari, Dr. Yamini is questioning whether there might be a different problem causing Molly's symptoms.  He said he assumes that Chiari is still the heinous culprit (see this at minute 3:40), but he isn't confident enough to perform such a dangerous surgery without ruling out some other possibilities.

Next Steps

Dr. Yamini will be consulting with his two colleagues at the University of Chicago, Dr. Curry and Dr. Frim.  All have performed a number of Chiari decompression surgeries; Dr. Frim has performed the most.  He will also talk with our neurologist. We are waiting for a phone call sometime this week (hopefully early this week).

Our Thoughts

We are exhausted and frustrated.  It took nearly 3 hours to get to the hospital this morning (rush hour + a 4 car pile-up = Steve yelling at cars). 

We feel both better and worse about things.  We feel better because we like the neurosurgeon and are thankful for his advice, cautiousness and candor.  We also feel better because we had assumed this surgery was a near-emergency situation.  He says it isn't, and we believe him.  We are thankful that we have a chance to make sure we don't do this surgery on too little info and regret the pain, suffering, and risks later. 

We feel worse because we felt this was a cut-and-dry situation.  "It's Chiari, it's not treatable by pain meds, so we plan to operate and make things better."  Now we feel a like we are being re-enveloped in mystery.  "Is this really the Chiari?  Or could it be something else?  And if/when she has surgery, will it really be the solution or will major symptoms remain?"

We hate the "worse" part of this.  It was a long, difficult drive home as we thought through the situation and wondered how long Molly would keep suffering like this.  I think Molly is more depressed about things now.  But in the end I think we are ready for whatever comes and look forward to doing whatever is necessary. 

Oh, and the best part of the day was eating at P.F. Changs on the way home.  Orange Peel Shrimp, baby!